NICE CFS/ME Guidelines SCOPE

Here is a copy of the SCOPE used for the existing NICE CFS/ME Guideline

I think that the next NICE stakeholders meeting 25/5 will be on a new scope.

Any suggestions for how we can improve the SCOPE this time? I'm going to try and go through this old Scope and find parts that contributed to the current Guideline being so bad.

 

Description of CFS/ME from the original SCOPE

"CFS/ME is a relatively common illness that places a substantial burden on patients, carers and families, and hence on society. It comprises a range of pervasive symptoms including fatigue, malaise, headaches, sleep disturbances, difficulties with concentration, and muscle pain. Symptoms may fluctuate in intensity and severity. It is characterised by debilitating fatigue that is unlike everyday fatigue and can be triggered by minimal activity. It raises especially complex issues in severely affected children and adults"

This description would seem on a first read to be roughly based on the Oxford criteria?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

 

Groups that the Guideline will cover

Groups that will be covered
a) The guideline will address the diagnosis, treatment and management of CFS/ME in children aged 5 years and upwards (including young people in transition to adulthood) who are mildly, moderately or severely affected by the condition.

b) The guideline will address the diagnosis, treatment and management of CFS/ME in adults who are mildly, moderately or severely affected by the condition.

c) Where good evidence exists, the guideline will make recommendations on different approaches to management for different groups of patients (for example, according to age, gender, ethnicity, or severity or duration of symptoms).

 

I have concerns re children given that the bulk of research is frankly diabolical and not concerned with ME at all.

 

a) The guideline will cover the clinical management of patients given a diagnosis of myalgic encephalomyelitis (or encephalopathy) and/or chronic fatigue syndrome.

 

Thank you for finding this - I haven't read a scoping document before so wasn't sure what it would look like.
Frustratingly I'm about to take a break away - and won't have much internet connection until late March.
Later....

 

Oh wow... much shorter than I expected! Only 8 pages.

 

On page 5 this is interesting.
It is as though GET and CBT are already written into the scope?
Why?
Also the getting back to school/work thing? Is that normal in other scopes?

 

Who will be writing the new scope I wonder? And what do other scoping documents look like?

 

Box 2.1 Members of the scoping group
NCC

• Director or senior staff member (Chair of scoping group)
  
  
• Project manager
  
  
• Information specialist
  
  
• Systematic reviewer
  
  
• Health economist
  

GDG

• Chair
  
  
• Clinical Adviser or topic specialist (if there is one)
  

NICE

• Guidelines Commissioning Manager (Centre for Clinical Practice [CCP]), plus staff providing technical support as necessary
  
  
• PPIP lead for the guideline
  

https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview

 

Here's a link to one on CP in children

https://www.nice.org.uk/guidance/ng62/documents/cerebral-palsy-final-scope2

Interestingly the references to school and education are more about participation. Just had a quick look though

 

and this was the SCOPE for the NICE Guideline for MS

 

You are so right!

d) Specific interventions covered by the guideline will include:

physical therapies (including graded exercise therapy)
life-style management (including pacing, graded activity)
psychological therapies (including cognitive behaviour therapy)

(And there were others as well)

 

Interestingly there was a section on what was not covered

c) The guideline will not address:

– the management of co-morbidities

– highly specialised procedures and procedures that are pilot/exploratory studies

service provision or models of care

 

But that is the scoping document for the old CG53, written pre Mar 2005, so would we expect any different? It's what the new one has in it that will count this time around.

 

That's part of the points I am hoping to make in this thread

1. How did the old SCOPE lead to the old Guideline

2. What we need to remove from the new SCOPE or add

There's a meeting 25/5/18 for Stakeholders on the new SCOPE.

 

I don't see anything to remove from the scope other than the specific reference to getting back to work and education, which is spurious as it applies equally to all illnesses.

It is interesting that service provision and models of care have been excluded. At the first meeting most of the discussion was about service provision and models of care. I had suspected that NICE would see that as outside their remit and that seems to have been the case. On the other hand there was an impression that the NICE representatives might think service provision was relevant after all. Regular follow up for checking for other diagnoses would be service provision and that was definitely considered relevant.

 

Is it worth including something on risks of harm associated with treatments? If they specifically want to include GET, for instance, then should there also be an explicit recognition that harms also need to be stated to allow for proper informed consent? Otherwise, the scope will go on about weak evidence for GET, etc, but probably won't mention any evidence of harms.